Abstract P1-08-10: A web-based Patient Decision Aid Toolkit for unaffected BRCA mutation carriers
Authors: Sarah A. McGarrigle, Carol Spillane, Niamh Byrne, Manria Polus, Geraldine Prizeman, Amanda Drury, Elizabeth Connolly, Anne-Marie Brady, Yvonne Hanhauser
Journal: Cancer Research (2023)

Abstract Women with a pathogenic mutation in the BRCA1 or BRCA2 genes have an elevated lifetime risk of developing breast and ovarian cancer. To address this risk, women are managed with a combination of surveillance and/or risk-reduction strategies. Decisions about risk management strategies can be complex, personal and multifactorial. Women often struggle with the decision-making process. In addition, within the clinical environment, there may be variations in recommendations between clinicians that can leave women uncertain and less able to choose a risk management pathway. The overall aim of this project is the development of a web-based patient decision aid toolkit for BRCA mutation carriers that will improve the decision-making process by providing the user with information about their cancer risk, options for risk management and potential benefits and side effects. Development of the patient decision aid was guided by the International Patient Decision Aid Standards (IPDAS). With appropriate ethical approval, a mixed methods approach was used to identify suitable content for the decision aid. A decision-making needs assessment was conducted to identify the information needs of women with a BRCA mutation. Semi-structured interviews were held with cancer unaffected BRCA mutation carriers (n = 16) and key stakeholders including healthcare professionals, policy makers and patient group representatives (n= 10). Data were analysed by thematic analysis. Systematic scoping reviews were conducted to synthesise relevant evidence on risk-management options, benefits, harms and the development and testing of patient decision aids in general. Content for the decision aid was refined using a Delphi process to build consensus on items for inclusion in the decision aid amongst a diverse panel of experts (n=13). A prototype patient decision aid was developed which included written information as well as visual depictions of risk, videos and photographs to enhance the patient’s information experience. A ‘values clarification’ activity was included to enable women to work through their own values and preferences relating to risk management interventions and their associated benefits and side-effects. Initial ‘sandpit’ testing of the decision aid prototype was performed by the research team and advisory group. Usability testing was conducted with BRCA mutation carries (n = 8) and healthcare professionals (n = 8) using both qualitative interviews and quantitative surveys. The research team made final revisions to the decision aid based on participant feedback and committee consensus. This evidence-based patient decision aid can be used by BRCA mutation carriers unaccompanied or during a clinical consultation. We envisage that this decision aid will improve the decision-making process by assisting women and clinicians during shared decision-making regarding cancer risk management. Citation Format: Sarah A. McGarrigle, Carol Spillane, Niamh Byrne, Manria Polus, Geraldine Prizeman, Amanda Drury, Elizabeth Connolly, Anne-Marie Brady, Yvonne Hanhauser. A web-based Patient Decision Aid Toolkit for unaffected BRCA mutation carriers [abstract]. In: Proceedings of the 2022 San Antonio Breast Cancer Symposium; 2022 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2023;83(5 Suppl):Abstract nr P1-08-10.